my life with Chiari malformation

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Two days until I go into hospital, so it’s time to decide what this experience is going to be. The way I see it, it can go one of two ways. It can either be the worst experience of my life so far, or the first step of the biggest adventure of my life so … Continue reading →

I suppose for most people, there are more important things to worry about before brain surgery than the state of your hair. For me, on the other hand, I was facing an imminent crisis if I didn’t find a way to manage the tentacle abomination that was my regular hairstyle. For the last year or … Continue reading →

…this is really happening, isn’t it? My excited optimism has been subdued somewhat, and while I wouldn’t say that I’m miserable, I’m certainly feeling quite heavy hearted and a bit fragile. I’m sleeping over 12 hours a night and then staying in bed all day. It takes only very little things going wrong to dampen … Continue reading →

Right now, I need to keep smiling to keep me strong, so I thought I’d share one of my greatest loves in the world: animals. Specifically, I thought I’d share pictures of very cute animals. I’ll leave out the cute spiders, snakes and octopuses from my picture collection, though, as I doubt many people find … Continue reading →

My anxiety about the whole surgery situation actually seems to be going down rather than up. As each day passes, I seem to accept more and more readily that it is going to be very hard, but that I’ll get through it. I seem to have accepted within myself that I’m going to go through … Continue reading →

One of the scariest prospects when you come to realise you have a disability is the idea that you might never be well again. The idea of being confined and dependant for your entire life is not only disheartening, it’s extremely frightening, as your well-being suddenly rests in the hands of other people that you know might … Continue reading →

“…or run a shelter for sick cats?” These are the ridiculous thoughts that occurred to me last night as I wrestled with my fear of surgery again. At 5am with a lack of sleep and a racing brain, they almost seemed like good ideas, so I had to rather forcefully convince myself to laugh at them and treat them … Continue reading →

Two weeks, my friends. Boy how time flies. I’ve always dealt with challenges better when I know exactly what I’m going to face, so I was quite lucky to find an Australian website that outlined the details of Chiari Decompression Surgery. The first time I read this, I felt considerably ill and didn’t open the … Continue reading →

Here is where my posts start getting less coherent, as now is when I’m truly feeling the fear about my upcoming surgery kick in. I’ll try my very best to keep updating this blog and share how I deal with it and keep myself going. I’m also going to try and be as honest as … Continue reading →

21 days to go. Time is moving too fast! I can’t believe there’s only three weeks until my surgery. I wish life would slow down for a bit and give me a chance to prepare, but I don’t suppose I’ll ever feel prepared for something like this. The one thing that I’ve found that really … Continue reading →

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Hi there, my name is Ella, I am 23, and I suffer from Chiari I malformation that has left me disabled for the last three years. As I begin this blog, I am a few weeks away from going into hospital for brain surgery to help alleviate my disability. I'm writing this blog as a document of my experiences for the sake of my own recollections.